tube feedings/ is it our choice?

damiensmom

New member
Well Damien is having nutritional faluire. that is what the nutrionist calls it. He has gained a pound a month fer the last 4 months. he is 8 months and weighs 14 pounds. he was 2 months preemie. He isnt losing weight but yet still they have set us up with a g.i doc. They want me to start tube feeds. He may be small but hes beautifull and happy. I just dont want to . is this ultimitly my decision can they make me? I mean he looks good our pic is in the forum photos. If he were losing weight or not gaining I would feel diffrent. I have felt the pressure from hes doc. I am wanting some help here. And some info on the elective aspects.
 

eli

New member
Hi Aria, don't feel pressured by the doc's.you are his mum and if you have no conerns than don't go ahead with the g.i tube.
My daughter was 6wks premmi weighing 1.3 kilos, she too was 14pponds at 8 months and was only gaining 11/2 pounds a month, sometimes none. Doc's mentioned it,i said no way. She is happy, healthy, not skinny and deffin not in need of a g.i tube.
That's my situation, anyway. Ihope it helps.

Remember chn ar fussy eaters, and they are not all going to piple on the weight.Also need to look at your family, are you all big people (i mean big boned/tall), are you little/short, fat/skinny. Your chn will obviously take after you and your family.

Regards Eli
 

anonymous

New member
Aria,

I've been doing a lot of reading on feeding tubes as we are about to get one for my daughter. If you just can't do it, than don't. But you have to ask yourself, why does the doctor want it? Isn't the doctor just as concerned about Damien as you are? I know doctors are not always right, believe me I know, but they are not always wrong either. There is a big physcologic factor with feeding tubes, I think mainly steming from the fact we mostly associate them with "end of life" situations. However, the studies now are showing its not just enough to be on the wieght charts, the CFers need to be at 50% on the chart to maintain healthy lungs and a healthy body to combat infections.

One major plus for the tube is you can feed/hydrate Damien when he's sick. With my little girl, there were two times before she was 2 that she got sick and developed a slight fever, and before we knew it she was dehyradted and her sugar level was in the teens. Thats not good.

I've seen a lot of negative feedback from the prospect of getting a feeding tube, but I haven't really seen a lot of negative feedback from people who have gotten one. Our friends locally resisted a tube for her little boy for a long time. He was in bad shape and the doctors finally forced it on her. She now says its the best thing she's done. And they have even had some complications with it (I think it pulled out once).

One question, what kind of tube are they wanting? The G-tube?
 

anonymous

New member
Hi, Aria. I also have an 8 month old baby who is 14 pounds. She gained a pound last month to get her to 14 pounds, but prior to that has had slower gains. I'm 5', my husband is 5'8", and my siblings and I didn't even make it to the growth charts until we were in middle school. Our doctor is great, but like a lot of doctors, he tends to look at the numbers without evaluating Ellie as an individual patient. He never asked about our family size, for example.

Ellie eats a ton, but just doesn't gain that much weight. I'm breastfeeding her, she gets a bottle of pumped milk at night with 4 tablespoons of rice cereal and one teaspoon of olive oil, and she eats a lot of baby foods. She will have 2 tablespoons of cereal, two jars of the stage 2 baby food, plus more olive oil. She's quite the eater, but it just doesn't translate at this stage to a lot of extra weight. Her older sister is the same ... she is 2 years old (no CF) and can sometimes out-eat me! I think Ellie is gaining at the best rate that she can.

I can totally understand the importance of having extra weight to fight off the things that these babies will need to fight off, but at the same time, like Aria mentioned, you are working within Damien's natural body limitations. I really feel like the weight gain will get easier as these babies get older too, when they can have more fatty foods like cream and butter.

At eight months old, with the steady gains that he is making, I can see why you are hesitant to get a tube.

-- Jenica
Mom to Abby (2 w/o CF) and Ellie (8 months, w/CF)
 

Ratatosk

Administrator
Staff member
What type of formula (or are you breastfeeding) is he on? When ds was diagnosed shortly after he was born, the dietician wanted him on pregistimil. He hated it! Would fight us all the way and refuse to eat -- Doctor said to feed him what he'll eat -- he'd been on infamil for about one day before his blockage was discovered and he loved that.

So we used regular formula at first, but they were concerned because he'd gotten a couple infections while in the NICU and wasn't gaining well -- so they switched him to a higher calorie version of his formula -- basically gave me a recipe for adding more powder to the water. Also, when DS turned 6 months old, his doctor told us to feed him whatever we were eating -- baby food is low in sodium and fat, so grind up regular food. We did do that to an extent, but DS had texture issues, so I would add butter to his babyfood oatmeal w/pear, salt and butter to baby food veggies and meats. He also loved yogurt and if I couldn't find the yo-baby, I'd add cream to regular yogurt..

This sounds horrible, but ds was a horrible breakfast eater (still is) and as he got closer to a year old, I'd add half an ounce of cream to his bottle and sometimes for a treat -- nestle's quik powder.

We found that our son loved certain foods and if that meant feeding him yogurt, babyfood mac & cheese and sweet potatoes & corn with every meal -- we'd feed him that. So if you haven't already checked into upping the calories in his formula and you're not sure about the tube feedings, I'd encourage you to check with your dietician and try to find some other alternatives. Liza
 
P

pepperderr

Guest
My now 2yo son was labled failure to thrive. He doesn't have CF but he had LOTS of trouble gaining weight. He lost weight ever since he was born. He was born full term at 7 lbs 9 oz. Every time he would gain an ounce or 2 in a week and the next week lost about 3 or 4 if not 5 ounces. That is why he was failure to thrive, not because he was a small baby on the scale but because he was losing and fell off the charts. I think he was 4 months old and he lost a pound a week they decided maybe they ought to do sometihng. He had an Nasal gastric feeding tube in his nose for I think 6 or 8 months, I forget when they finally started it. They kept saying he might need to get the Gastric tube right into his belly but by the time he was 1yo, I asked them to put him on pediasure and he has GAINED and GAINED ever since. He no longer needs the NG tube. I am not that familuar with CF but for now if I were you, I would hesitate to do a G tube if he is gaining even a little at a time. In a few moths maybe he can try Pediasure. I know it can work wonders. If they really push it, maybe can you try and NG tube first? FYI. Nathan was 12 lbs at 8 months. I just checked his records. Good luck. I know it is hard. We always want to do the best for our kids.

Rebecca
 

JRPandTJP

New member
Okay, I think doctors are absolutely great in crisis situations, but I have to say it has been our experience that they can also create crisis when our babies are growing in a normal and healthful way. This "must" or "should" be in the 50% crap is crazy!!! What are they robots who need to be slammed into a mold...no they are individuals who are unique, grow at different rates, have slow periods, spurts, walk and talk at different times and in their own unique ways...why on earth would we look to someone who doesn't even know our kids to tell us how big he is "suppose" to be! How much is enough? Is the child healthy, growing, developing, happy, eating well, stooling well... if yes then I think they are playing a control game and a second opinion from a/your pediatrician or family practitioner may help you determine if she is having a "normal" growth curve<b> for her</b>.

Babies who are premature or have slow starts aren't going to jump to the 80%...that wouldn't even be considered healthy by most pediatricians (our pediatrician told us they look for a nice consistent curve with no major jumps below or above percentiles, even for kids with very rough starts). At one point during his RSV at 9 months old he dropped from 15lbs to 12lbs because he couldn't eat...we asked to place him on the NG tube again to avoid a hospital stay. He ended up admitted again since he couldn't keep anything down and to have anitbiotics in case of secondary infection. Once he was better he put it back on quickly with a combo of NG and breast until he was stable. But I will tell you, we never felt the NG formula feeds helped much to get his weight up more quickly. It just helped get him back on track after diagnosis when he had been without enzymes for 14 weeks and when he was unable to eat orally. Once we saw an evening out of weight gain and my supply came back, he gained at the same rate as he did on NG with formula or better. In fact, after the inital little spurt, the more formula he got the more frequent his stools became and he required 3x more enzymes. Once we weaned him of formula and back to breast only he continued to gain well and steady. It took a year but went from 3% to 50% with only breast milk and food. He has never had dairy (still can't) and we have found other ways to give him calories as he fully weaned from the breast. A pound per month is quite good for breast fed babies and is considered normal.

I feel you have to put your foot down sometimes and develop realistic goals with them as they tend to microfocus on weight, especially when they are healthy. I wouldn't also wonder if they aren't a little concerned about the breastfeeding factor since they can't measure that...have they been supportive? They were very unsupportive of us and I had to stick to it without their support. They used alot of fear tactics about G tubes and overnight feeds until I stopped mentioning breastfeeding and brought up that my pediatrician and I are pleased with his weight and growth chart and they needn't worry as I continued to go for weight checks 2x a month. Then they dropped it and backed off.

Regardless of what you decide, I think you have to grow comfortable with asserting yourself, using information/research and other professionals to back you up if need be, and ultimately doing what feels right for your baby. If you really feel she is well and growing as she should, arm yourself and make an alternative plan with your pediatrician that they can't refuse (consistent gain, plus weekly/biweekly weight checks, and a promise to call if she dips below a percentile; other than that you are sticking to what you're currently doing as it is proving consistent gain). This will allow you to get what you want while protecting yourself from unnecessary threats that you aren't doing enough for your child. This will also ensure that you have a record of all the things your are doing to ensure appropriate weight is being gained and you are being seen by an "authority". It is a bit of a game but so far we have just had to play a few until they settled down about stuff and realized how dedicated we are to his health and well-being.

If Ben seriously dropped in weight or we felt he wasn't doing well, we would call them right away to see what we could do. If for a short time he had to be on a tube or have to add power shakes or other things, we would absoultely do it. But when things are flowin' they need to just celebrate with us and realize it is okay to have a quick follow-up appt with nothing much to discuss!!

Sorry this is long...just some fresh memories I just. It can be frustrating the first year for sure. Let know what you decide...feel free to email me.

Warmly,
Jody jody@meta4tech.com
 

eli

New member
Aria, another thing i foregot to mention is taht your baby was premmie. Premmie babies will be smaller in general and usually take up to 3yrs to catch up in in growth/weight.
Those were the words of our peadiatricain.

Eli
 

damiensmom

New member
I needed those replies, and I will take what ever the hes team dishes out. I can take it. I know they are not trying to hurt him,there hes docs, and I hold no resentmeant. I appreciate them and what they do. I feel they dont always look at things beyond a medical standpoint satistically. I will stay adameant about my decision. I will start adding butter and salt to baby food.Great idea thank you. Damien loves yo- baby I used it for enzymes, but Ill give him more. I love Yoplait custard style it has more cals than any yogurt I know of. He has been on pregestimil 27 cal.we were on pancreacarb ms-4 but in all the hub bub with hes doc and nurtitionist about hes weight they asked me to try creons again thinking there were to many beads in three pancreacarbs and we were losing them in the process, I have to admitt it is alot and now that he is bigger creon has not given him the tummyache it use to. and there are alot less beads. I will only reconsider if he loses weight 2 months in a row. I will also remind them Damien is almost a year old and soon we can do all sorts of things to get more cals. thank- you for that reminder. I will also re- mind them of that fact. I I WISH COULD FIGURE OUT HOW TO ATTACH PICS TO A POST. I would like to add cream to hes bottle . I was told no younger than 1. has it been done younger? It was mentioned in a reply. This is getting to be a long one . God Bless everyone.
 

damiensmom

New member
Eli your little girl is georgous. Just a beauty. Damien has dark hair and eyes also. I love dark hair being a blondie I dyed it brown as seen in my photo in the forum but it doesnt last long.
 

anonymous

New member
I put olive oil in everything that goes into Ellie's mouth. At one point I think it got to be a little too much because her stools were getting oily. I cut back, and her stools returned to normal. I haven't given Ellie any dairy yet, but once she is a year old and I do, I'll start adding the cream and butter to everything as well.

I do think that the olive oil made a big difference in Ellie's weight gain though. Olive oil has a distinct taste to it, so I would start very small and work your way up. If Damien just won't tolerate the taste, you can always try corn oil as well.

Jody, that was so perfectly put! I think we all have felt the frusterations of "blanket analysis" from our doctors. If my Dr. ever starts getting pushy about the feeding tube, I will reread this post for encouragement!

-- Jenica
Mom to Abby (2, w/o CF) and Ellie (8 months, w/CF)
 

JRPandTJP

New member
Walnut oil is a nice oil to addd, high in omega 3 (helps with inflammation) without the taste of olive oil (even canola is good...I think corn is not considered an omeag 3 rich oil). We were also adding MCT oil to his baby food at first. Like I said after he caught up a bit we haven't had to add too much in the way of fat. I focus on protein and overall calories more than fat because it seems to upset their tummies and enzyme routine. We have been on Creon 5 since diagnosis and now he is on 2 Creon 10 at every meal (1 with a smaller snack). I am not familiar with the ones you mentioned but I know they told us not to place them on anything but apple/pear/fruit sauces as they can start to break down before they reach their small intestines. Not sure if yogurt can break them down before? Can you put them on yogurt? It'd be nice to have an alternative to pears and applesauce. Just curious.

Aria, you sound like a wonderful advocate for you Damien. You go girl! Hang tough.

Jody
 
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